Reply To: 6 Years Post GBS

If you have the axonal form of GBS (AMAN, or AMSAN) you should explore Rituximab treatments with your doctor and insurance company. You’ll learn a lot about Rituxan from our members including discussions on getting insurance companies to cover the drug. Please review the following forum topic threads:
https://forum.gbs-cidp.org/topic/rituximab
https://forum.gbs-cidp.org/topic/anemia-due-to-cidp/page/2
https://forum.gbs-cidp.org/topic/cidp-rituxan-treatment
https://forum.gbs-cidp.org/topic/i-got-some-rituxan-and

Typically, it takes around three years for the body to rebuild itself (as best it can) following GBS. Progress is slow because Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft. This is agonizingly gradual but there has been little that can be done to speed up the process, except for the very expensive and experimental HSCT stem cell transplant treatment.

Axonal damage, depending on severity, may not be something our bodies can easily reverse. Here are some articles that address what may be done to help Axonal damage:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5243173/
https://www.sciencedaily.com/releases/2017/03/170308131202.htm
https://en.wikipedia.org/wiki/Neuroregeneration

You are still in the regrowth stages following GBS/AMAN. You still have hope that many of the symptoms you are experiencing today may diminish or go away. Try to be positive about your future and don’t expect that all things will get back to pre-GBS levels.

I’m 73 and confined to a wheelchair, even though Rituximab did give me back some functionality.